Im a 26 year old female, who should hold the job title of professional patient these days. Although that is a pretty low paid job.
Really, I am just a regular 20 something person trying to find my way in life, whilst fighting a body that seems intent on trying to kill me.

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Thursday, June 09, 2011

This week has taught me a lot. It has taught me, that it is ok to ask for help. It has given me a lesson in patience and that no matter how much I think I know my body, there is always room for surprise.

The journey home from London completely and utterly wiped me out. I knew there would be reprcussions from the feelings I had in the train station, yet they still shocked me when they came around. I literally couldnt move for the first couple of days home. Walking from one room to the next was a challenge and focusing on conversation was just too much. I slept through the night and would go for a nap in the afternoon. But with each nap, I would need to be woke about 4 hours later with some force for I was in such a deep sleep.

I was going to an appointment the next morning with my mum and reaslied I wouldnt have time or energy for a shower before I went, so I decided to wash my hair in the sink under the tap. (Yus this is something I do semi frequently, usually to avoid getting red splodges up the wall or when I have a trach and fear showers) By the time my hair was rinsed, I sat on my bed with a towel wrapped around it and just didnt know what to do. I had a list of things that I needed to do. Change my dressings, take my meds, run some nebs, set up humdifier and dry my hair. Just the thought of moving made me want to cry as I just did not have the ablity.

Luckymum came to check on me on the way to bed and saw me biting my lip trying not to get annoyed. She helped me set things up and dried my hair and such. But that just felt like such a huge step back. After trasnplant, I fought so hard to get back to the place of being able to be independant that I swore I would never get into that postion again, I swore lots of things, but that and never using a wheelchair again where my two big ones. I went back on the wheelchair one last year but needing help just to get by,or just to run treatments, was a big one.

Since, things have improved a little and I am now able to keep on top of my own care once again. However, I am still taking 4 hour naps in the afternoon and generally finding things difficult. Right now, I have a size 6 trach tube in, this means I am breathing through a 5mm gap, so even smaller than just before I went in last.

Today I could have done with being rested and having that little extra energy, as it was Mums first Chemo session. It went ok, took forever sitting waiting, then about an hour for the drugs to go through. She has felt okish so far, but has gone to bed feeling sick. I imagine tomorrow is going to be much harder. But we will take that one day at a time. Though I did give her a big lecture the other day, about how she should go into it positive and none of this crap about how awful its going to be and how she wont be here next year. I said, you have had good luck, your 60odd and got to that point with relatively good health. To spend the next 18 months getting to a point of wellness again, in a lifetime really is nothing. She started going on about how she was old and cant deal with things being old. I said, well I would rather have goten sick when I was old and had my life to live, but grass is always greener huh. I think that got through.

I dont know. I know she has a lot to go through, but I also know my mum and know she works better on a tough love approach. I do love her and care for her, but right night, tea and sympathy will not help her. And this is where I am a little pissed at our GP. She has known my Mum for years and yet is really mollycoddeling her. You know, heres some sleeping tablets to take and dont go out shopping or do this or that. I still believe that if she had dealt with things orginally, rather than burrying them under sleeping pills, then the sleeping pills would have a much better effect now that she needs them.

I have a lot of ill feelings towards my GP at the moment, which is turning into an issue. For reasons I wont go into, right now, I can not bear the thought of seeing her,but I am getting to a point where I really could do with seeing a doctor. I just, cant right now.

Last night, I didnt sleep, not because I wasnt tired, but because I was in agony. Its another viscous circle. Because I am breathing through such a small gap, I struggle to keep my chest clear and cough the crap off it. In order to clear it, I have to cough with so much force. The force of coughing has strained all the muscles in my neck, meaning right now when I cough, I am almost in tears and lying down, is agony. But if I dont cough, I block up and need to cough even more fiercely.

I am taking the strongest painkillers that I have here, but its not touching it anymore.

Last night, I fell asleep about 6am, with no humdifier on, because i couldnt stand the added pain of anything touching me, only to wake up again at about 8. I woke up disorintated. At first I thought I had been to theatre or something because all I could focus on was pain.A more urgent thought then kicked in that I couldnt breathe and so I quickly changed my tube. When I took the old one out, It was virtually compltly plugged, with perhaps a a pin head sized space through the middle. It took me about 20 minutes before I could focus enough to take more painkillers and about 90 more minutes for them to kick in enough for me to sit.

When my breathing goes crap, my oxygen levels stay fairly ok most the time, its the C02 that builds up and this had obviously happened for a while before I woke. The headache eventually settled about 3pm. I still dont know why my body decided not to wake me to tell me.

I am getting used to not being able to breathe, but the pain is making me grouchy. I cant find a comfortable way to sit, its just there, constant.

1 comment:

Hey Kim, I posted a reply but it wouldn't take it >.<ANYways, I've got my fingers crossed and sending good wishes and love.Sorry things haven't come out like you hoped. I hope the pain is under control/gone now.love yakxx

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About Me

What can I say. This is me.
I used to be fairly interesting, with days constructed around training to become a nurse.
These days however, are a little less and interesting and yet a little harder to get through.
I still try to live life to the full, I was given the gift of a second chance via a Liver Transplant a few years back.
Now all that stands in my way is a failing airway and a few mental hiccups when my past tries to define my future.